Day 8: Families Can Be Together Forever

Even with everything going on, my body needed sleep. Every ounce of energy had been drained and my body just couldn't handle any more. Luckily we had a room at the hospital that they were letting us stay in; however, it was a hospital bed that I am fairly certain is smaller than a twin size bed. I had the shakes so bad that even with the layers of clothes I had on, and the blankets, and the heating pad on full blast, I was still shaking uncontrollably. So for that night, I was thankful for that tiny bed, because at some point Logan finally came in there and snuggled up close enough that the shakes finally stopped.

That morning our families trickled in to kiss and love on him. For the first time, we were able to dress him. Emmy was also able to come in and hold him and sing. Thankfully, she didn't understand what was going on at the time, so she was nothing but excited to see her baby brother again. She would frequently glance around the room, noticing others that were emotional, and look confused as to why we weren't whole heartedly smiling with her. I'm so glad she got those last moments with her baby brother, and even though I'm not sure she will remember, I'm glad we have pictures that she can look at to remind herself of the joy she felt while holding him.

Eventually it was time for our family to leave. This is when I know for a fact that as the comfort of our families left the room, a team of angels and our Heavenly Father quickly filled the empty space. I sat in the rocking chair and was handed Dawson, finally dressed and wrapped in a soft, thick blanket. The monitors were removed so we could hold him without waiting for the wailing of the alarms. We held him tight and rocked him, as if we were just waiting for him to take an afternoon nap. He stared at us for only moments before he peacefully fell asleep in our arms.

A moment that before I went through it I would have imagined as heart-wrenching and absolutely devastating, is actually held as a dear memory in my heart. It's a memory of a time I felt nothing but love for my most perfect baby. It's a memory of a time I felt prayers streaming in at an outrageous speed. It's a memory of a time I felt nothing but love and comfort from my Heavenly Father.

We miss our sweet baby Dawson daily. But we know his frail body is no longer feeling the pains of this world and that he is being taken care of while he waits for us. We know that we will see him again, and we are so very thankful for that knowledge.

DAY 7

After talking to the doctors Sunday morning, we realized that he was slowly getting worse, and that the best thing for him would be for him to slowly be taken off oxygen. We knew this was the best thing for him, and that his time on this earth was coming to an end.

However, I had gotten really sick. I had a high fever, couldn't stop shaking, and severe pain in my side. After talking to Dawson's nurse, we decided I better head to the ER incase my incision had become infected.

The ER visit was quite entertaining. My incision looked fine. I didn't have any kind of infection. I got to have a CT scan. Long ER visit short- I was just still recovering. I needed to be eating better, taking my pain meds, and relaxing. Maybe I had over done it a tad-at least thats all I'm gonna post here. If you want the official of what my doctor actually said after looking at me then ask me in person. ;)

When we finally got out of the ER, I had to go lay down and sleep. I was beyond exhausted and couldn't handle anything more that day. We decided to keep him on the oxygen he was on, relax that day and night, and come back to it the next day. I would get to hold, stare, and love on him for a little while longer.

DAY 6

I honestly don't think I got very much sleep that night, if any, and remember feeling like I was just going through the motions but not really there.

This morning was supposed to be Emmy's first ever dance recital. She had practiced long and hard for months for this day, and I couldn't imagine not being there for it. So much had happened that week and I felt like I had put her on the back burner, and I just couldn't do that to her for this moment too.

I wore the same clothes I had worn for 2+ days, got in the car with Logan from the hospital, and we headed towards her recital. For the 3 minutes that she was on stage I was taken away from all of the heartache. She was beaming the entire time she was up there and couldn't wait for her next recital.

After her recital we headed back to the hospital. From that moment until that evening, I don't remember anything that happened. I'm sure there was a lot of sitting in the recliner by his bed, a little bit of holding him as to not disturb him too much, and a lot of wondering what was to come.

That night I lost it, which is probably an understatement if you ask my husband. I was confused. Friday night I thought I understood what was happening. I thought that even though he was pretty much on life support, that at some point his fragile little body would just stop responding to the oxygen. I guess I thought it would be that easy, and that we wouldn't have to make any more decisions for him.

But that night I needed more answers. I had been told he wasn't much longer for this life, but yet he was still here. I was mourning him but still trying to soak all of him in. Turns out it is hard to do both, and it can really throw you off.

It's hard to tell you how I was feeling, because unless you are going through it then you have no idea. I know a lot of people thought they knew what was happening. I know a lot of people thought we would be able to keep him but he would just be a little different. But that wasn't the case, and we knew that. Even if you came to visit us at the hospital, you couldn't know how we were feeling through all of this. You weren't there when we would talk to the doctors and nurses. You weren't there watching his every (lack of) move. And you especially were not there when we would cry to Heavenly Father looking for answers.

They stuck me back in a room with a hospital bed that night and Logan made me sleep, because that's truly what I needed to do to be able to make it through the next few days.

DAY 5: Diagnosis Trisomy 13

That morning we woke up and headed straight for the hospital for the doctor meeting. At this point we knew that there would most likely not be any "good" news, and that the chances of us just waiting for the Chromosome test to come back would be our routine for the next few weeks.

That morning at the meeting we were shown a picture of his brain. Most brains have ridges, his did not. We talked more about meeting with a neurologist so that he could tell us what parts of Dawson's brain were functioning properly and which were not. Honestly, I didn't want to know what wasn't functioning. I'll admit it: I was too scared to know. I wanted to pretend he could hear me, smell me, SEE me, and know that I was his mom. The last thing I wanted was for a doctor to tell me that he was nothing more than a cute little body.

With all of the awful news we kept receiving, we were still happy to hear that later that day we would be able to hold him.

My dad arrived that day with his camper in tow so that him and my mom would be able to stay as long as they needed to.

Around 5 the nurses called to tell us that they had to switch him from a normal oxygen tank to a non-invasive ventilator, which was pushing oxygen into his lungs and was one step away from intubation, because he had stopped breathing 10 times in one hour.

We were getting ready to head to dinner when we got a call from the nurses again. They wanted to know when we would be in because the doctor was coming in (on a Friday night) and wanted to talk to us. We decided that Logan, my dad who hadn't gotten to see Dawson yet, and I would go ahead and go in and talk to her before we went to dinner.

It was pretty obvious she didn't have good news for us. Not only had she come in on a Friday night, but she also asked us if we had eaten dinner yet. She pulled us into Dawson's little area, closed the curtain, and told us the news. She had gotten a call back about his Chromosome test. He did in fact have Trisomy 13.

At that time we were asked if we would like to sign a DNR, which means Do Not Resuscitate. Because we had signed the DNR and he had been having so many problems that day with breathing, we were under the impression that he would not make it through the night. Family members were able to come in and hold him and we had pictures taken of him.

Even Emmy was able to come to the hospital and see him for the first time. I'll never forget how she looked at him with such love, care, and worry when she saw the place on his hands that he had been poked multiple times for an IV. She loved when he would wrap his clenched fist around her finger, which before this night had been clenched too tight to hold. Everyone was able to hold him, but I think Emmy could have held him and sang "Twinkle Twinkle" to him all night. He didn't open his eyes much, but when she started singing his eyes would dart around.

It was surely an exhausting night for Dawson, but he was able to be held by those who wanted to hold him without having any apnea episodes. After everyone left, Logan and I stayed in Dawson's room. Logan slept in the horribly uncomfortable recliner, but I had to go to a couch in another room to get just a little sleep since my incision was not liking the recliner.

It was a restless night full of the unknown of when or if he would decide he could no longer breathe.

DAY 4

After the awfulness of Day 3, my parents decided it was time for them to start heading my way. It was clear that this was not going to be as easy as we thought and that we would need more support. I was also starting to worry about how all of this was affecting Emmy, so I was ready for my mom and dad to be there so that they could get Emmy back into her normal routine and make it easier for us to make trips back and forth to the NICU.

Before we went to bed on Day 3, his night time nurse came by to talk to us about putting a PIC line in Dawson so that they could stop having to re-do his IV.

At 3 a.m. that morning I woke up crying and didn't know why. Not 2 minutes later that same nurse walked in and told us that they had inserted his PIC line and that it was working great and that he did good with the procedure. One of our many prayers had been answered that night. He wouldn't have to be poked nearly as much as he had been.

That morning we weren't as excited for the meeting with the doctor. We were afraid of more bad news and didn't think we could handle hearing any more. After looking at the EEG, the doctors had agreed that there were no signs of seizures, which was a relief. However, they noticed that there wasn't as much brain activity in certain areas as there should have been. We asked to have a meeting set up with the neurologist in hopes that he could explain more about this and more about what areas of the brain weren't responding as they should.

Just when we thought the meeting was over, the doctor added one more thing that made us realize that there was a chance that no amount of money may be able to help him. She told us she suspected that he had Trisomy 13, which would mean that his life expectancy would be incredibly low.

I didn't even ask to hold him that day. He was going to get the wires and wrap off of his head from the EEG and have his brain x-rayed so I knew he would be exhausted from all of that and didn't want to cause him to lose any more sleep.

That afternoon my mom arrived and I was released from the hospital. Logan, Emmy, my mom, and I went back to our house. We ate a normal dinner, bathed, and Logan and I decided we couldn't handle it any longer. We had to get back to the NICU and see him. It felt so wrong being home without our baby boy. It felt wrong sitting in what was to be his room, no longer pregnant, but without him laying in his crib.

At some point that night I did what everyone always tells you not to do: Google it. I started to look up the signs of Trisomy 13 and even looked at pictures. While many of the pictures and signs were much worse than Dawson, I knew in my heart at that moment that he had Trisomy 13 and that he most likely would not be healthy enough to come home with us.

DAY 3

The night before, I had sent Logan home to get some real sleep. Poor Logan had been sleeping on the chair/couch thing that they have for the dads that really just looks like a really hard cot. Not only that, I was waking him up every couple of hours to help me get out of bed to go to the bathroom, get my pump ready, then walk Dawson's milk down to the NICU. Before that night I didn't realize that he was also taking advantage of Dawson's care times as well. So Logan was being a baby hog and getting to change Dawson's diaper and take his temperature, which before I sent him home that night I didn't even realize there were set times for that!

Wednesday morning, probably around 5 a.m. I walked down by myself because I was going to see Dawson and hand deliver his milk and change his diaper. While I was down there I remember talking to the nurse and she said every thing had gone great through the night. I was ecstatic. This would mean I would get to hold him AGAIN this afternoon.

We couldn't wait to get to doctor rounds that morning. He was doing awesome so maybe we would get to try to feed him a bottle on top of holding him?! Things could only get better.

Things didn't get better. In fact, more problems were coming to light. I just stared at the doctor as he told us that the nurse thought she had seen signs of a seizure in the night. I thought there was no way. I had visited my baby in the middle of the night. Everything was fine. He was fine. That afternoon he was to be hooked up to monitors for his brain and have a video camera on him to watch his movements.

But that wasn't all.

He had another chest x-ray to look at his lungs and within the past 48 hours there had been no improvement. Even worse-at some point his collar bone had broke. This x-ray also showed that his bones were incredibly brittle. They were going to do x-rays of his lower half to make sure all of those bones were ok.

Those two things meant one thing to me at that moment: I would not be holding my baby today.

The doctor would not tell us his suspicions of what kind of condition we were looking at with Dawson at this point. He just kept saying we would most likely have to wait 4-6 weeks for the chromosome tests to return to find out if he had a chromosome syndrome.

Craving something to be normal in my life, I sent Logan to go get Emmy and to take her to dance class. After she went to dance class I wanted her to come see me, because if I couldn't snuggle Dawson then I was going to snuggle Emmy.

After he left I made my way back down to the NICU. Unfortunately I had walked in on them hooking the monitors to his head for the EEG. That was the moment it became real to me. I never imagined that my baby would have to have an EEG.

I took no pictures on Day 3. I was hoping it would be a day I could forget.

As I sat there watching my baby sleep and cry, I wished more than anything that I could take all of his discomfort away. I wished he didn't have to have his head wrapped. I wished he didn't have to lay on and around all the wires. I wished he could stop being poked and prodded and having to get new IVs all of the time. And I wished the machines would all stop beeping at him.

We did a lot of praying that day. Praying that all of the tests would come back that he was fine. Praying that this would be but a fleeting moment in his earthly journey so that he could live a long and happy and healthy life.

DAY 2

This was by far the best day that week, and will definitely go down as one of my top days ever. Every morning the doctors and nurses would do rounds in the NICU and talk to the parents and get them up to date on what was going on with their baby. That morning they had decided it would be ok if I finally got to hold Dawson for the first time. I was over the moon and could not wait.

He was so precious. I hated all of the things he was hooked to (oxygen, feeding tube, IV, and a bunch of other things that I didn't understand) but I got to hold him and that's all I cared about at that moment.

While I was doting on my baby, there were things happening that I didn't get, but the doctors were throwing things around. Dawson's lungs weren't doing well so he was on antibiotics to get gunk out. He was having a hard time swallowing so they were having to suck saliva out of his mouth a lot. His umbilical cord was questionable, which made them suspicious of his kidneys and bowels. And probably more noticeable to others than to me at the time-his forehead was shaped a little different because his fontanelle had closed prematurely. The doctors also kept asking me about my blood Chromosome test results, but I didn't think anything of it. Surely they were just asking a lot of routine questions.

All of that meant nothing to me at the time because I looked at him and thought he was just my perfect baby that was just a little bit of a preemie.

How could anything be wrong with my baby? Everything was going to be fine and he would be in the nursery I had stewed over for months. He was going to wear the adorable outfits I had been very picky about. I was going to get home and finish his blanket because in a couple weeks he was coming home with me. And I couldn't be more excited.